When people ask, "How are you feeling?", can they handle the truth?

When a person asks someone with chronic illness, "How are you feeling?", most of the time the inquirer is not prepared for the answer. Here's the bottom line:

Chronic Illness is uncomfortable to talk about for people who have never experienced it. I've already done a post on "My Do's and Don'ts of Fibro Talk". 

Today though, we're talking specifically about the dreaded question, "How are you feeling?"

Why is that question "dreaded", you ask? Let me explain, from my personal perspective, at least.

When someone asks me how I'm feeling, I have two options:

1) I can give them the answer most people want to hear: "I'm fine." This relieves any responsibility of the inquirer having to listen, understand, or sympathize. Yet, it allows them to feel good about themselves for asking in the first place. It ends the conversation quickly and allows everyone to go back to their business. Done and done.

Yes. It sounds callous. But our society has resorted to empty greetings in passing because most people are too busy/distracted to really listen. It doesn't make them a bad person. It just makes them a typical human. When I answer like this and I'm not really "fine", I feel like I'm cheating myself and I hate not being truthful. Which leads me to my second option...

2) I can tell the inquirer the truth. Some days, the truth is "I'm fine." Most of the time, however, people inquire when they notice you aren't feeling/looking well. Personally, I feel guilty or bothersome when I answer truthfully. People who don't live with chronic pain are able to be more carefree and positive. I'm not saying those with chronic illness are negative, but a huge part of our survival is being real with ourselves. And just because we're acknowledging we aren't feeling well, that doesn't mean negativity for us. It's just another part of our typical day. We  rarely get "carefree days," if ever. I tend to feel like a Debbie Downer though when I'm honest with people about my pain levels because it isn't the "typical response" to the question. I tend to be emotional when I'm in pain anyway. So for me, the reaction from the inquirer can really affect the way I'm feeling about myself. 

Being honest with someone about my pain levels is a very intimate, vulnerable thing for me.  I don't like to admit my pain often. The less I talk about it, especially when its really bad, the less over-whelmed I get. I choose very carefully who I talk to about my pain and struggles. A statement I made in my "Do's and Don'ts" post is to please not handle me with kid gloves. If I openly talk to you about my pain, I'm not expecting you to fall all over me with sympathy. In fact, for those who know me, I tend to approach things with humor. Even though this illness is a very serious thing in my life, sometimes taking the seriousness out of it helps me to cope. 

The reality of it is, I'm reminded daily that I can't live my life like a normal 25yr old newlywed. So to cope, I like to say things like, "I'm going to cut off my elbow", or, "I really need a back transplant", or, "I'm going to punch my immune system in the face." Granted most of the time my friends and husband reply with, "I'm going to have to advise against that." But they understand. That's what makes me feel better.

However, in the rare times I am serious when I share how I'm feeling, I know it can be awkward for the person inquiring. What do you say to someone who has a condition that has no cure? I've already gone over what NOT to say. If you are ever in need of an appropriate response, here are some that could help:

"I'm sorry you're hurting. I'll pray for you."

"That really sucks man. Hang in there."

"I'm sorry to hear that. I hope you feel better."

However you decide to reply, remember to be GENUINE. We can spot fakes a mile away.

An example that actually happened today that is NOT an acceptable response (and a great example of Option #1's reaction) is this:

Inquirer: How are you feeling today?

Me: Thanks for asking… My back and hands are still really bothering me. My chiropractor told me I was a “train wreck” yesterday…and I do have to say, I feel like a train ran over me a few times. I think it’s just the fluctuation in weather. I’m hoping to be feeling better by this weekend. I’ve got so much to do with the church event on Saturday.

Inquirer: Great. Glad to hear you're feeling better.

I'll pause so you can process for a moment.....

Yes. That actually happened. And this is why I try to choose carefully who I am honest with. Clearly this is a person I should have replied to with, "I'm fine." They weren't really interested in the answer. 

My advice today is PLEASE don't be that person. If you're going to ask, be prepared that you may not get a quick and easy response. Our lives aren't quick and easy. Everything is complicated, and once in a while, explaining that to someone makes us feel a little better. If you are chosen to be that person we share details with, try to be a good listener. If you don't know what to say, its OK. Just don't respond like the person above did. A response that is inappropriate based on the information given is not only frustrating, its down right hurtful.

This post goes out to all of my fellow Chronic peeps that are afraid to answer with the truth. 

Insurance Companies are Communists

There is not nice way to say this:

My insurance company sucks. I have had nothing but trouble over the past two years since I started seeking treatment/diagnosis/etc. First it was my Chiropractor. God Bless him for helping us in spite of the crap my insurance pulled. I called them over and over and fought with them on the wording in the plan description. I consulted other people who had more experience with insurance lingo. Yet, the answer they gave me was, "It depends on how its interpreted."

SERIOUSLY!?! So what they were really saying was, "Well, today I feel like interpreting it so it says I'm going to leave you hanging with $1000's of bills even though we said we'd cover it at first."

Yep. Super awesome.

When I got hooked up with my Rheumatologist, I thought things were going alright. We had a very clear expectation of how much of the quarterly visits would be covered, plus all of the tests/x-rays/prescriptions that would be required during my diagnosis period. It still cost us a bit of money, but we made it work. We have finally gotten into a rhythm with my doctors visits and prescriptions...my pain management plan is working (mostly), and I feel better than I've felt in a long while. HOORAY! This is the ultimate goal of any chronic pain survivor!

Well go ahead and just smash that little happy bubble. A few days ago I received notification that as of January 1st, my insurance company is no longer going to cover my Cymbalta. For those of you who aren't as familiar with all of the different meds used to manage Fibro, Cymbalta is in a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors). It is used to treat Depression, Anxiety, pain from Fibromyalgia, Chronic Low Back Pain, Osteoarthritis pain, and nerve pain from Diabetes. 

Cymbalta works differently for everyone, but for me personally it has been an AMAZING help. I have been on several different anti-depressants throughout my life, and from a psychiatric standpoint, Cymbalta has worked the best. (My husband and mother will attest to this too!) 

Some of you may be thinking, "Why don't you just ask for the generic?" or "Why don't you just switch to something else?"

It isn't that easy. Cymbalta has no generic available. It is extremely expensive. WITH my insurance, I was paying close to $50 for a 30day supply. WITHOUT my insurance, it will now be impossible for us to afford it. 

How much is it without insurance? <Drumroll>

$220 for a 30day supply. (For context, that's more than my car payment.) 

Needless to say, I'm going to have to change meds. Again. 

Let me tell you, transitioning from one anti-depressant to another is NOT a happy fun time. You have to be weened off of one completely before starting the new one. For me, my sensory overload gets put on over-drive, my (emotional) nerves freak out, and in general, I am just NOT fun to be around. High-strung and crazy is an under-statement. Or at least that's how I feel like I am during the transition.

So....I'm extremely fearful of the transition...and I'm especially fearful that whatever medication I get put on will not work as well as the Cymbalta does. 

So there you have it. Insurance Companies are Communists.

The Process of Acceptance

Yesterday I made 5 weeks sober.

"The only solution is to let go of who you once were and try to embrace the person you are today."

This is one of the many statements I wrote down when I first started brainstorming for my blog. It was followed by the questions,

"Who did I used to be?" and "Who am I now?"

To be honest, I'm not even sure I know the answers to those questions. But I'm going to try my best to answer them now...so bare with me here. It might be a little rough.

Who I used to be: Emotionally reactive, whether it be happy, sad, frustrated, or down right angry. My emotions always led the way. There was no hiding it. Some people referred to me as "high strung." I can't say that I would disagree. I overloaded my plate ALL of the time. I wanted to do everything for everyone. I was completely and totally insecure about everything. When I say everything, I mean down to every. word. that. came. out. of. my. mouth. Everyone who was nice to me, I assumed they were just "humoring" me. Even though I was successful with my job, I required confirmation from my boss or other peers to feel validated that I really was doing well. In fact, I required validation of my feelings about most anything. 

Constantly I felt guilty because there was always something wrong with me. When someone would ask what was wrong or if I was in a bad mood, I'd normally lie and just say I was tired. I felt like a hypochondriac. I didn't understand why, at the mere age of 24, I felt so bad all of the time. I was destructive. Emotionally and physically. I'd literally hate on myself all of the time. I hated that I gained weight. I gained enough to where I decided I'd never lose it. It would be impossible. I hated that I was socially awkward, when all I wanted was to fit in (this stems back all the way to grade school.) I hated that I couldn't just "get myself together" and be "fine." Did I mention that I hated there was always something wrong with me?

 Physically I'd destroy myself by staying up too late, not sleeping enough, eating food that only further displeased my already messed up digestive system, and of course alcohol. Lots and lots of alcohol. If you're familiar at all with the show How I Met Your Mother, you'll understand when I say every time I drank, my mindset was, "Challenge Accepted." How much could I drink and manage to still stumble up the stairs to my bedroom. Or not. A few times I allowed relied on Jeremy to help me. The next morning I wouldn't remember things that happened the night before (which is bad since I don't remember lots of things when I'm sober either.) I hated myself for drinking, so I'd drink more to not feel so bad about hating myself. Yes I know, that doesn't make sense. But the mindset of someone with an alcohol issue usually doesn't make sense. I never felt like doing my make-up or hair in the morning, so I'd say I didn't care. But then I'd be self-conscious every day at work and feel ugly. Even though I had some really interesting and nice accomplishments, none of it really seemed to be that big of a deal to me. To sum it up, I hated myself and assumed no one really liked me either.

Who I am now: I'm still emotionally reactive, but I'm getting better at controlling it in certain situations. I've also accepted that my emotions make me who I am. I also have made it a point to remove myself from situations that I know will only increase my stress. (Stress is the easiest way to start a flare, for me at least.) I try my best to only associate myself with people who impact my life positively. I try to limit the things I commit myself to. I realize I can't fix everything for everyone. I try my best not to dwell on everything, especially the things I have no control over. My awesome friend Kalli has helped me a ton by helping me identify the things I can control, and quantify if the result will be "the end of the world," or what the worst case scenario really is. (Usually it isn't nearly as bad as I make it out to be.) 

I lost 30lbs before my wedding. By doing this, I realize it isn't impossible. I have put back on a bit of the weight I lost, but I don't hate myself. I'm not that little 130lb thing I used to be (and probably never will be again), but I have learned to dress myself appropriately where I can still be comfortable in my own body. And most of all, I have realized and accepted that my husband didn't fall in love with 130lb little ol' me. He didn't even know me then. He fell in love with the heavier, curvier me. And I feel secure in that. I've worked through a lot of the insecurities regarding my friends and the feelings of being "just humored." I learned to accept that its quite possible there are people on this planet that sincerely enjoy being around me. (Gasp!) 

When I'm asked how I feel, I'm honest, but I've learned how to phrase things in different ways to where I don't constantly sound like the Debbie-Downer I used to hate. Instead, when I'm asked how I'm doing I choose to focus on the good things going on in my life, thus giving me a positive answer. It isn't a lie to say, "I'm doing well." I have a lot of really great things going on, and I'm learning to cherish them as they are. I've also stepped out of the bitterness and started asking how other people are doing. I know that may sound extremely selfish, but used to I would never ask, "How was your weekend?" or other variations. Frankly, I didn't want to know because I knew it would be better than mine, because mine inevitably sucked. I'm getting better at what I like to refer as, "The Social Contract." I also realized that I do not have to drink alcohol to comply with, "The Social Contract." I do not have to drink alcohol at all for anything. So I don't. It's hard, especially at get-together's with friends and everyone is having wine or a martini. But my husband is encouraging, and so far I've done ok.

Most of all, I've begun to accept that I am enough. I do have times where I fall down the rabbit-hole of doom and despair, but for the most part I feel good about myself. I'm involved in an amazing support group, I get along with people at work, I'm confident my boss likes me, and I'm finally back at church. In spite of my pain and in the moments of sadness when I get frustrated that I even have to deal with this illness, I also know that God would not have given it to me unless I could handle it. This was a wake-up call for me. The moment I realized I had no control over my body, and never had, I was humbled to the grace of God and reminded that He has had control all along, regardless of my attempts to ignore Him. I was also reminded that I don't have to go this alone. My hope is only that I can continue on the right path and to lean on God when I need strength. 

So it seems that letting go of the old me would be easy since the old me didn't seem to pleasant...but it was hard. And I still hold on to bits and pieces of the old me. I'm still cynical about most things, but I'm much more open to positivity than I was before. I have chosen to be Happy.

30 Things About My Illness You May Not Know

This post was originally supposed to be done during Invisible Illness Week (Sept. 10-16). At that time though I hadn't joined the awesome world of online health networking, so...I kind of missed it. However, I think the concept of this post is really interesting. My awesome Fibro-Sister, Untypically Jia, inspired me with her rawness and honesty. I hope to inspire someone else the same way with my own sincere answers to this exercise.

1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety

2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999

3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???

4. The biggest adjustment I’ve had to make is:
Acknowledging my physical limits, and accepting my feelings/emotions are valid. 

5. Most people assume:
I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
 
6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.

9. The hardest part about nights are:
Staying awake long enough to get everything done.

10. Each day I take 11-15 pills & vitamins.

11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.

12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.

13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.

14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.

15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.

16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.

17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.

18. Something I really miss doing since I was diagnosed is:
Dancing

19. It was really hard to have to give up:
My previous job.

20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach

21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.

22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.

23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.
-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.

25. My favorite motto, scripture, quote that gets me through tough times is:Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.

27. Something that has surprised me about living with an illness is:
I am more in touch with my body and my emotions now than I have ever been.

28. The nicest thing someone did for me when I wasn’t feeling well was:
<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.

29. I’m involved with Invisible Illness Week because:
Well, I actually missed it. But I'm definitely going to be involved next year!

30. The fact that you read this list makes me feel:
Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.

Body vs Mind: The Civil War

I’ve been thinking about this post for quite some time now but I just couldn’t quite figure out how to word everything I wanted to say. Finally, I decided I’m just going to word-vomit it all down on here, do my best to edit said word-vomit, then post it and hope someone besides me understands what I’m trying to say. So, here goes nothin’…

Body vs Mind is like Fibromyalgia’s own Civil War. What I mean by that is, with all of the different aspects that the Body and Mind disagree on in cases of Fibro (or other chronic illness'), it’s like a bunch of separate battles happening all over that get wrapped up into one big war called Fibromyalgia. Make sense? Probably not, but I’ll try to explain.

Battle #1: My Brain says it hurts, but the medical tests say it shouldn’t.

To reference my last post, Fibromyalgia is invisible. When you first go to the doctor and start describing your pain, they’re going to run every test in the book. They’ll be looking for cartilage damage, tendon and ligament damage, auto-immune diseases, vitamin deficiencies, red/white blood cell count, cholesterol, kidney function, liver function…ok you get the point. If you have Fibromyalgia (and not any other prominent issue), all of those tests are going to come back negative/non-conclusive. They will find NOTHING. What will make the biggest difference in your life though is if your doctor has the brains to tell you, “It’s OK,” and that the negative test results are all part of the diagnosis process. You ARE NOT crazy. The pain is REAL. It’s just that all of the initial tests don’t go looking into your Central Nervous System. Even if it did, it’s not like your CNS is holding up a big red flag that says “Oh hey! I know the answer!” The CNS, being the complicated system that it is, does not tend to offer up much in ways of answers when it comes to Fibro, yet. Doctors are still researching to find definitive answers for us, and I have faith that they will.

Battle #2: My Brain thinks I can, but my Body says otherwise.

Sure! Your brain says it would be a great idea to go out clubbing with the girls until 4am. But your body is going to cruelly make you pay for it tomorrow (and probably for the following week.) This battle is one we Fibromites start fighting before we even get diagnosed. It’s the first official “Sneak Attack.” Once being diagnosed, you will gain extra tools in your belt to understand the “enemy.” If you choose to use the tools, you CAN win this particular battle and the enemy (your body) can slowly start becoming your friend once again. It all comes down to Acceptance. If you can accept that your Body is changing (whether you like it or not) and that your mindset must change with it, this battle goes down in your History as being a turning point in the long war that is Fibromyalgia. By listening to your body, you may feel like you are surrendering to it; and in a way you are. But by doing so you will gain the upper-hand and become triumphant once more!

Battle #3: I know I should listen to my doctor and exercise, but my body tells me, “No way, Jose!”

This is a battle I still fight each and every day. Even in my younger years, I associated exercise with pain. It was just a little more bearable back then since I loved marching band and teaching dance was one of my jobs. By now I’m sure you know there is currently no cure for Fibromyalgia, you should also know that there are very few remedies researchers have found that work. One remedy that has proven to work time and time again is exercise. I know; how in the heck should Fibromites be expected to exercise when we are fatigued and hurt all over? Well, here’s how: In terms of Fibro, exercise takes on a new definition with each Fibromite. Just like each person’s pain is different, the amount of activity that can be done differs with each individual. Once again, IT’S OK. This is another one I’ve had a hard time coming to terms with. Just because I used to be able to leap in the air and do the splits, doesn’t mean that in order to exercise I have to throw myself back into an Advanced Ballet class. (Trust me, I tried. It was kind of tragic. Follow the link if you want a good laugh, though.)

I understand that in Battle #2 I told you to listen to your body. Now it’s going to seem like I’m contradicting that very statement. I’m not, though; just consider this a grey area. In the times you feel like you just can’t move, the BEST thing you can do for yourself is to move (in most cases.) Your worst enemies in this battle are both your Mind AND Body. How? By being in pain, your Body is going to discourage you from feeling like you can do one of the two things researchers have found helps everyone with Fibro: EXERCISE!!! I’m not talking about running a marathon or lifting weights. If you know me at all, I have proclaimed running is against my religion since the 7th grade.

I have learned from my support group meetings that some of us walk with canes, some have to wear back and leg braces, and some of us have other illness’ that accompany our Fibro. But when we do our movement exercises as a group, everyone can participate. We do some of our stretching while sitting in chairs, some standing up, and some sitting on the floor. Just doing a small amount of movement allows blood to flow through our achy muscles and tired joints. It is the movement and energy flowing through our body that allows us to flush the pain/toxins out of the nerves. What happens when we get tired and we’re hurting? We lie down or sit down, often for long periods of time. Don’t get me wrong, I know resting is a huge part of feeling better; but if we only rest and never move, the energy and toxins in our nerves/muscles have nowhere to go. Instead, they stay put and muster, resulting in even more pain.

Battle #4: Mind over Matter

I can confidently say this is a touchy phrase for all of us. At some point in time, I'm sure some idiot, (pardon my honesty), has said to you, "You can control the pain. It's just mind over matter!"...or something along those lines. And as we all know, if we could simply will the pain away, we would have a LONG time ago. While we don't have control over the fact we have been given this chronic illness burden to bear, we do have control over some of the things that make our pain worse. I feel that its extremely important for any person with a chronic illness to take responsibility over the things they can control. We are our own advocates when it comes to our health, and when the effort is put forth, there are ways to make our quality of life the best it can be in spite of chronic illness. It is OUR responsibility to do that though. Not our doctors, not our caregivers, spouses, not even the medication. While we would love to depend 100% on all of those people/things, the only thing we can truly depend on is ourselves. No one will ever know our bodies like we do. If we listen close enough, our bodies tell us exactly what we need. However, until we've accepted our new friend Fibro, for better or worse, we won't be in the right head space to be able to utilize all of the tools and hints our body gives us to make our lives better. We most work with the universe, not against it. 

In my own personal struggle with Fibromyalgia, I have triumphed over Battles #1 and #2 (for the most part). My biggest struggle remains Battle #3. To this day, I have the hardest time finding the motivation to get up off my bum and stretch or just simply move around. The fact that I am able to do so little compared to what I used to be able to do often discourages me. I feel like the little bit I am able to do is insignificant. THIS IS WRONG. I am wrong. (Go ahead and mark it down in your calendars folks.) The truth of the matter is, when it comes to Fibromyalgia, every little thing helps. I feel like Battle #4 is a daily battle for me. Some days I want to lie down and blame the whole world. But on my good days, I get up, take responsibility for myself, and I fight like hell.

<No matter which battle you're currently in, please feel free to reach out to me for support. If you’re discouraged about movement/stretching/exercise or if you're interested in learning relaxation techniques, I would be happy to make recommendations that are simple based on what you are able to do!>

Removing the Invisibility Cloak from Fibro

DISCLAIMER/PREFACE: I am not a doctor/healthcare professional. The information I am about to share is collective of my own personal research/findings from various websites and articles. If you have Fibro, much of this information will not be new news to you. My goal is to share this information in a way that is easy to understand by people without Fibro, and also to be used as a tool for people with Fibro to share with others.

When most of you read the title of this entry, you’re immediately going to think of the awesomeness that is Harry Potter. (You have good taste, by the way.) Unfortunately this post has nothing to do with Harry Potter, Hogwarts, or magic of any kind. This post is going to be mostly informational, but not to worry! I promise to make it interesting!

Thus far in my blog, I’ve mentioned how Fibromyalgia is an Invisible Illness, and that there is chronic pain involved. I’ve told you about my personal experience with said pain, but I have not explained how and why the pain occurs in the first place. Don’t worry, I’m not about to throw a bunch of medical mumbo-jumbo at your face. This isn’t a pie throwing contest (although that would be fun, too). I promise this entry will be painless (Ha) and maybe even a little fun. So, let’s get started shall we?

First, let’s start with how pain is received by a person who does not have Fibromyalgia. Typically it goes like this:

• *Contact with stimulus -- Stimuli can be mechanical (pressure, punctures and cuts) or chemical (burns). 
• **Example: Hand touches hot stove.
• *Reception -- A nerve ending senses the stimulus. 
• **Example: Nerve says, “You idiot. I guess I better send the troops to alert the brain.”
• *Transmission -- A nerve sends the signal to the central nervous system. The relay of information usually involves several neurons within the central nervous system. 
• **Example: “Charge! The skin has been infiltrated! Alert, Alert!”
• *Pain center reception -- The brain receives the information for further processing and action. 
• **Example: ”OUCH! That’s hot!”

* http://science.howstuffworks.com/environmental/life/human-biology/pain.htm
**Baylee’s Examples.

People without Fibromyalgia have what would be considered a “normal" nervous system. Their nervous system can tell the difference between an un-harmful touch and a painful touch. For example, when a non-Fibro person sits down on a chair, nerve endings in their back and buttocks are constantly shooting signals up their spine to their brain so they can feel the pressure on their buttocks from sitting in the chair. Since their brain can sense that it is not a harmful touch, it sends back a “No Pain” message that still allows us to feel the sensation of pressure on our buttocks from sitting, but it does not cause pain.

People with Fibromyalgia have what is considered an “overactive" nervous system. Many articles and doctors say our nervous system is on “Sensory Overload.” Being that the nervous system is the director of The Five Senses, (Taste, Smell, Sight, Touch, and Sound), things get interesting when all five, or even just a couple of the senses are in over-drive. Often times in certain areas of the body, un-harmful touches are interpreted as painful touches. Because of this, a simple hug or squeeze on the arm can be nearly debilitating. The best way I can personally describe it is it feels like someone poking at a bruise. My sensitive areas are the sides of my legs, calves, and arms.

In addition to the over-loaded touch-sensors, a person with Fibro may have extreme sensitivity to lights, sounds, and smells. (I personally have not experienced a heightened sense of taste, but I’m sure it happens.) Sometimes I feel like I have “pregnancy-nose.” I will smell things and ask my husband if he smells it too, and he’ll just look at me like I’m nuts. Loud, abrupt noises always make me jump, and I  prefer a darkly lit room to bright fluorescent lighting.

<Do you have Sensory Overload problems? If so, what are they?>

Another way a person with Fibromyalgia experiences pain is in their joints and muscles. This is usually referred to as “widespread pain.” Widespread pain occurs when the nervous system gets overloaded with messages of perceived pain from the nerves. When the brain gets overloaded with these messages, it can’t keep up with the “No Pain” replies that should be getting sent back down to the nerves. Instead, the brain (figuratively) throws its hands up in the air, leaving the overload of pain messages to land where they “fall.” This allows the pain messages to get sent back out into the body like an “Out of Office Reply.” Only these replies do not have a set destination; thus, widespread, sometimes randomly placed, pain. 

Over several years of research, doctors came up with eighteen (or nine pairs) of trigger points to test. In order to be diagnosed with Fibromyalgia, you must have a minimum of eleven “active” trigger points. (You also must undergo several blood tests to rule out other diseases.)

These trigger points are found in the following areas on both the left and right side of the body:

• Back of the Neck
• Elbows
• Front of the Neck
• Hips
• Lower Back
• Knees
• Upper Back
• Shoulder

To view a trigger point map, go here.

As you can see, most major junctions in the body are listed above. Not everyone with Fibro has pain in each one of these points, but as stated above, you can bet there is pain in at least eleven of these locations. This is why you often times hear someone with Fibromyalgia say, “I hurt all over.” We really do! Because each Fibro patient is different, each person has an extremely personal, customized treatment plan. If you have a good doctor, your treatment plan should be continuously evolving with your Fibro symptoms. No one day is ever the same with our trickster, Fibro. However, being in touch with your body and learning your limits definitely helps to avoid major flares.

A common misconception about Fibromyalgia is that it is a Disease. This is FALSE. Fibromyalgia is a Syndrome. What’s the difference? I thought you’d never ask! 

Highlighted below are the two qualifications Fibro does not meet, meaning it cannot be a Disease:

Disease: a morbid entity characterized usually by at least two of these criteria:

1.     Recognized etiologic agent (cause)

2.     Identifiable group of signs and symptoms

3.     Consistent anatomic alterations

Syndrome: a collection of signs and symptoms known to frequently appear together but without a known cause.

Simply put, Fibromyalgia is not what is there; it is what is not there.

Confused? Don’t worry, keep reading!

We still do not know the cause of Fibromyalgia. Many believe the development of Fibro can be attributed to a physical or emotional trauma. (I personally agree with that.) I will say, if there is one thing to be thankful for regarding Fibro, there are no “consistent anatomic alterations.” AKA: Fibro does not cause joint damage, or any other alteration to the body like an auto-immune disease would. It is literally INVISIBLE!!! No test can “find” Fibromyalgia. It is also extremely common to have other illness’ that coincide with Fibromyalgia that are visible, such as: Irritable Bowel Syndrome, Depression, Anxiety, etc. This is why in order to be diagnosed with Fibromyalgia, one must undergo several tests to rule out other diseases (many of them being auto-immune.)

Therefore, because we do not know the cause of Fibromyalgia, and it does not cause internal or external damage to the body, it cannot be a Disease. SYNDROME, SYNDROME, SYNDROME!

/steps off soapbox

Lastly, let’s talk about the word “Fibromyalgia” and why it was chosen to represent the many symptoms that encompass this chronic SYNDROME. Here’s the breakdown:

Fibro -- Fibrous Tissue (This is where the overactive nerve endings live.)
My -- Muscles (Where some of the pain is felt.)
Algia -- Pain

Pain in the fibrous tissue and muscle. Make sense? See, I told you this would be easy!

Hopefully I have been able to help you “remove the Invisibility Cloak” from Fibro for yourself or someone else!

<Are there any examples you like to use when explaining Fibromyalgia to friends/family/co-workers/strangers? If so, please share!!!>

My Do's and Don'ts of Fibro Talk

As promised yesterday, in addition to the awesome points Maggie makes in her blog post, "A Guide to Talking About Crohn's," here are some "DO's and DON'Ts" that have personally affected me when talking about Fibromyalgia. Some of these may come out a little...abrupt, if you will. But just stick with me, I promise to explain where I'm coming from.  

Here we go...

DO ask questions. This is important. I am always thrilled when someone wants to learn about Fibromyalgia. There are a lot of unanswered questions as to why people develop Fibro and how it’s developed. Some doctors still don’t even believe it exists (which is ridiculous). HOWEVER, even though many questions about Fibro still cannot be answered with 100% accuracy, there IS a lot of research and facts that can be understood easily. Ask me! I’ll be happy to tell you. 

DON’T ask me if it hurts. Ok so this is one that may sound a little harsh. Stay with me here, I'll explain.  When I’m asked “What happened to your wrist?” or “Did you hurt your back?” because I’m using an ice pack (or whatever the situation is), my usual answer is, “I have a chronic illness called Fibromyalgia. What that means is I have chronic, widespread pain in my joints and muscles. Ice packs help me a lot, so you’ll see me with them often.” 

Now, what I've done here is given a brief explanation that includes a few key words: Chronic, Illness, and Pain. (Remember those, kids. You’ll need them later.) I've also told the inquirer why I use the ice pack (or wrist brace, or whatever) so that in the future, there will be the expectation/understanding that this is normal, for me. My goal is to make what can be an awkward/uncomfortable situation for the inquirer, more comfortable and easy to understand. These kinds of situations can be extremely uncomfortable for the inquirer because often times they feel like they have asked a question that is too personal. (Another reason why I'm doing this blog...to educate non-fibro peeps that it's OK to ask.) 

After I have given you my brief explanation, if you come back at me with the question, “Does it hurt?” I will normally answer, “Yes,” and leave it at that. (I will also be thinking "Here's your sign," in my head.) If you then ask me, “Does it hurt really bad?” I will imagine punching you in the face and asking you, "Did that hurt?" (Yes I'm exaggerating. I would never actually do that, for those of you who are still getting to know me.)

Let’s go back to those three key words I told you to remember:

CHRONIC: This means all of the time, never-ending, FOR-EV-ER.

ILLNESS: Yes. I am sick. Unfortunately this isn't a sports injury that will go away over night.

PAIN: Yes, a Chronic Illness that causes Pain does mean I hurt, all of the time. Some days I hurt worse than others, but it is always there. Always.

Moving on....

DO believe me. When I tell you I’ve reached my limits, or spent all of my spoons, then I have. As a person with a chronic illness, I spend all day every day fighting to make myself look and behave as “normal” as everyone else. I don’t wake up and fight all day long just to use my illness as a cop-out. If I stay up too late, I’m the one who has to answer for it tomorrow, not you. And even though an extra thirty minutes may not seem like a lot to you, that thirty minutes could be the difference between me being able to get out of bed on my own in the morning, or having to have my husband physically help me up. This time I am not exaggerating.

(Please) DON’T baby me. I don’t need to be handled with kid gloves. Don’t get me wrong here. I appreciate sympathy, maybe even a little empathy (although it’s technically impossible unless you’ve lived the illness). However, I would prefer both sympathy and attempted empathy over cruel, disregarding, mockery. I CAN still function. I just have to do it differently than you. My brain is still alert and active (with the exception of my Fibro-Fog moments), but I’m still me. I haven’t changed, my lifestyle has.

And finally,

DO be patient with me, please. I know this is a lot to take in for you, and it still is for me too. I’m still getting the hang of my new lifestyle, so sometimes I will have to cancel our plans on short notice. I know it may seem selfish, but I really do have to focus on what is best for me and my health. Please, try not to be angry with me.

 Well, that's all folks!

Do any of you have DO’s and DON’T’s when it comes to talking about your illness/disability/situation? Everyone has their own story. Some choose to tell it, and some choose to keep it private. You don’t have to have a chronic illness to have pet peeves about telling your story, though. It could be about a recent divorce, loss of a loved one, depression, addiction…the list is unlimited. In all of these situations, people are going to try to help you. By identifying the most productive ways to talk about it, it will not only help you, but it will help those around you to best serve you in your time of need…even if that means to just let you be.